adult hydrocephalus

Conference Registration is OPEN!

Registration for our 15th National Conference on Hydrocephalus is OPEN! Join us in Orange County, California, June 28 – 30, 2018.

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Book Your Hotel for Conference!

Housing is open for the National Conference on Hydrocephalus which will take place on June 28-30, 2018 at the Irvine Marriott in Orange County, California. Book your hotel!

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Dan Kricke, living with hydrocephalus

Aging Out of Pediatric Care: A Cautionary Tale

Four. That is how many different hospitals I visited trying to transition from a pediatric to an adult neurosurgery program in the midst of a shunt malfunction.

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NPH

Like Father, Like Son: An NPH Journey

One man watched his father decline into a state of confusion until diagnosed with Normal Pressure Hydrocephalus. Then he found himself traveling the same road.

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Hydrocephalus Association Education Days

Hydrocephalus Education Days Provide Connections

Complementing our National Conference on Hydrocephalus, we are proud to host Hydrocephalus Education Days in select cities across the USA.

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Hydrocephalus WALK in Indiana

Why I WALK – For a Better Tomorrow

The WALK has become so important to me because I know how it feels to be alone and confused after being diagnosed with hydrocephalus.

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Adult living with hydrocephalus

Finding that Perfect Fit

It was truly amazing to be surrounded by people who either have hydrocephalus themselves that know exactly what it’s like to live the way I live,

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Madeleine, Hydrocephalus Association Teens Take Charge blogger

Living with Anxiety & Hydrocephalus, Part 3

I was asked a question I had never been asked in a job interview, and I thought it was a great question. The question was: “What motivates you?”

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Inspiring 26 Miles: A Posse of Penguins Take On the LA Marathon

Inspired by her cousin, Jessica, and her journey with hydrocephalus, Katie, along with other family members, set out to run the LA Marathon in Jessica’s honor.

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National Hydrocephalus Conference

Conference Registration is OPEN!

Registration for our 14th National Conference on Hydrocephalus is OPEN! Join us in Minneapolis, Minnesota, June 16 – 19, 2016.

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Adult living with hydrocephalus

Travelling a Parallel Path

Amy Booher reflects on her experience attending the National Conference on Hydrocephalus. She looks forward to speaking at this year’s conference in Minnesota.

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10 Reasons to Attend Conference!

Our biennial conference is a cornerstone of our commitment to serving our community. You don’t *need* a reason to attend conference but here are some good ones!

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National Hydrocephalus Conference

Countdown to Conference: Tips on making it affordable!

The National Conference on Hydrocephalus takes place June 16 – 19th in Minneapolis, Minnesota. Join us! Here are tips to help make it affordable.

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14th National Conference on Hydrocephalus

LEARN MORE: National Conference on Hydrocephalus

LEARN MORE: The 14th National Conference on Hydrocephalus will take place in Minneapolis, Minnesota, on June 16-19, 2016!

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Dr. Mark Hamilton, Adult Hydrocephalus Clinical Research Network

Upcoming Webinar: AHCRN Update

Join us for our next webinar on the Adult Hydrocephalus Clinical Research Network (AHCRN). Tune in to hear about progress after 1 year of patient enrollment.

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Survey

How Can We Serve You Better?

We continually strive to provide the best support and education services, and most current, comprehensive information and resources to assist our community. Take a brief survey and help us develop programs and services to better fit your needs.

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Hydrocephalus Patient Conference

MINNEAPOLIS: We are on our way! 2016 Hydrocephalus Conference

SAVE THE DATE: The 14th National Conference on Hydrocephalus will take place in Minneapolis, Minnesota, on June 16-19, 2016! Our patient-centered conferences empower all of us to understand, seek out and put into place the care, programs and services that will meet our needs now and well into the future.

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Dan Kricke, living with hydrocephalus

Realizing I Had Hydrocephalus

Dan Kricke talks about the first time he realized he had hydrocephalus when he was 5 and the various emotions he had along the way to adulthood.

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Bryant Williams, adult living with hydrocephalus

Learning to Date Me

Bryant, our new guest blogger, shares openly about the unconditional support of his fiancee and resilience of their relationship as he lives with hydrocephalus.

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Dan Kricke, living with hydrocephalus

Telling My Story

Meet Dan, a new guest blogger lending his voice to our adult hydrocephalus community. We are excited for Dan to share different aspects of his journey each month.

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American Academy of Neurology Annual Meeting

Happening NOW! American Academy of Neurology Annual Meeting in Washington DC

HA represents the patient voice at the American Academy of Neurology Annual Meeting in Washington DC.

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Shunt to treat hydrocephalus on glass model skull

Predicting the Need for a Shunt after a Brain Bleed

Diagnosing the need for a shunt early after someone has had a brain bleed could prevent additional neurological deterioration, study finds.

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Dawn Mancuso, CEO, Hydrocephalus Association

Celebrating a BANNER Year!

With our eligibility to receive research funding through the CDMRP to launching our Adult Hydrocephalus Clinical Research Network, it has been a year of WINS.

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Hydrocephalus Research Webinar

Upcoming Webinar: Hope in Progress

Tune in to the Hydrocephalus Association’s next webinar to hear the latest on hydrocephalus research, AHCRN, and HA funded research.

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Adults living with hydrocephalus

Building Community: A case for adult hydrocephalus research

The Adult Hydrocephalus Clinical Research Network officially launched in October, with a goal to deliver high quality, high impact hydrocephalus research.

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Married to Hydrocephalus

“When I first met my wife, Jennifer, I had no idea what hydrocephalus was…” In an open, heartfelt blog, Andrew shares a husband’s journey with hydrocephalus.

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Hydrocephalus Video Blog Parents

Pregnancy and Hydrocephalus

In this installment of Debby’s video blog series, she discusses pregnancy and hydrocephalus, sharing from her personal experiences with her daughter, who has hydrocephalus, and the birth of her first grandchild.

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American Heart Association Grant to Study Brain Swelling

The American Heart Association has granted a second-year resident in the Department of Neurology at the George Washington University School of Medicine and Health Sciences a $154K grant to study brain swelling and injury after an intracerebral hemorrhage.

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NYC Hydrocephalus Education Day Featured Image

NEW Hydrocephalus Education Day

The Hydrocephalus Association in partnership with NYU Division of Pediatric Neurosurgery announce a one day Hydrocephalus Education workshop in NEW YORK!

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LA Kings Insider Sends Out an LA Hydrocephalus Association WALK Invitation

Jon Rosen with the LA Kings Insider shares details about hydrocephalus and the upcoming LA Hydrocephalus Association WALK, co-sponsored by the LA Kings.

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Journey with hydrocephalus

Go For Your Dreams!

In this installment of Debby Buffa’s video blog series, “Through a Mother’s Eyes: The Journey with Hydrocephalus,” she motivates a young viewer by encouraging her to go for her dreams.

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Charlotte HA WALK Featured on WCCB Charlotte

WCCB Charlotte features the 2nd Annual Greater Charlotte Hydrocephalus Association WALK which will take place on September 13, 2014, at the Elizabeth Park, Little Sugar Creek Greenway.

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Walking 30 Miles for Hydrocephalus Awareness

The News-Herald reports on A.J. Alley, an Allen Park, MI, resident who lives with hydrocephalus, will embark on a 30 mile walk on August 17, 2014, to raise awareness and funds for hydrocephalus and the Hydrocephalus Association.

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National Hydrocephalus Conference 2014

2014 Conference – Adult Track Highlights

The Hydrocephalus Association’s National Conference on Hydrocephalus offers adult attendees an opportunity to find the information, resources, and support they need to live confidently with their condition. Join us in Portland, Oregon, July 9-11, 2014.

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Dawn Mancuso, CEO, Hydrocephalus Association

From the CEO: Sowing the Seeds of Exploration into Hydrocephalus

In her monthly blog, Hydrocephalus Association CEO Dawn Mancuso shares insights into our recent Research Workshop, “Biomarkers in Hydrocephalus,” held in St. Louis, MO, in late April, which brought together over 30 of the world’s leading experts in biomarkers.

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Transitioning from Pediatric-centered Care to Adult-centered Care for Young Adults with Hydrocephalus

In this installment of the Hydrocephalus Association’s video blog series, “Through a Mother’s Eye’s,” Debby Buffa addresses the question of how to make the transition from a pediatric neurosurgeon to an adult medical team to manage on-going care for hydrocephalus.

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Update on the Adult Hydrocephalus Clinical Research Network

The Adult Hydrocephalus Clinical Research Network Planning Committee finalizes the policies and procedures for collecting data from adult hydrocephalus patients at its 6 clinical centers and reviews protocols for its first clinical study.

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Upcoming Research Webinar: Delivering on a Promise

Join the Hydrocephalus Association on Monday, March 3, 2014, at 7:00 p.m. EST for our next webinar, “Research Update: Delivering on a Promise,” exploring the latest advances in hydrocephalus research and showcasing several exciting studies being conducted to better understand the basic science of hydrocephalus and clinical protocols for treating patients.

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TB Caused Hydrocephalus in Philadelphia Woman

The Philadelphia Inquirer details the story of medical professionals trying to determine the sudden onset of hydrocephalus in a 48-year old Philadelphia woman.

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2013: A Year in Review

As we wrap up 2013, Dawn Mancuso, CEO, Hydrocephalus Association, reflects back on (and marvels at) all that has happened this past year for the hydrocephalus community.

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